Today was Baby K's appointment with the ENT. We have been waiting anxiously for a month since his hearing loss diagnosis for this appointment. I must say I was a little disappointed. Everything we discussed I already knew because I researched it and was told the same info from all the other doctors we had seen. We waited a month for them to tell us that he will need to get fitted for hearing aids (between 3-6months), then if they don't work start looking towards getting him cochlear implants. So now we have to make another appointment to get him to get the hearing aids. We could have saved a trip to the ENT and just gone to get fitted for the hearing aids since all he did was look in his ears for two seconds! From what I have learned about the implants is that the sooner they are implanted the better (In Texas 12 months is about the earliest) but hearing aids, a lot of testing, and insurance clearance needs to be done first. So if he needs hearing aids then let us get started on the process of getting them now, not when he is six months old. If he needs a MRI then we need to start ordering it now. I say get started now because I work in the medical field I know how long things take, and if we have to wait a month in between every appointment he may not be able to get his implants by the time he is 12 months old. I told the ENT how I felt about all of this and he immediately started working on getting us in for the hearing aids and the MRI, he was even able to get Baby K in to get his genetic testing done today. They drew his blood to test for the flawed Connexin 26 gene that is associated with hearing loss. We should have those results in a few weeks. Finally I feel like we are getting somewhere!
Such a brave boy! He even had a smile on his face after being poked for blood on his little arm.
6 comments:
Wow! You have a really nice blog!! I think it is so cool that there are so many bloggers out there! Youhave such a cute little guy there! I suppose you hear that a lto! Nice blog! keep it up!
~Hannah
Trips to the ENT are usually pretty unproductive, in my opinion! How frustrating!
Don't give up on the hearing aid trial yet! Some kids end up getting some benefit from them (even if not enough, but enough to give them access to loud sounds and low frequencies, and at least good sound awareness! Lucas was not a good HA user, but we sure tried! There are 2 blogs that come to mind when I think of good HA users who now have CIs... in fact they're bimodal users (1 CI & 1 HA) who are really successful! (Christian @ live*laugh*love*family and Ben @ b-orange).
Good luck to you!
Way to be pro-active, that is the best way to be. You are the one that has to fight for your child, if you don't do it, no one will.
Hopefully, you will be able to get the hearing aids soon. Just remember that even if it seems like he is getting no real gain from the hearing aids, they are training his brain to accept the CI's(if he goes that route).
I look forward to reading about your journey.
I felt the same exact way after our first visit with the ENT. It seemed like the one month of wait time between the audi telling us Aiden was deaf to the actual ENT appt was FOREVER. I couldn't wait for that appt. because I just knew the ENT was going to tell us Aiden wasn't permanently deaf, that he just had all this fluid and it could be "fixed". I was a very disappointed mommy walking out of that office ... same as you ... he told us everything we already knew, looked in his ears, and sent us on our way. All we could do from that point though was move forward, and it sounds like you're ready to move forward too. Once Aiden got his HAs it seemed to get somewhat easier ... it made it real and we knew it was such an important step in our baby hearing one day. Good luck with the HA fitting!
PS - We had Aiden's MRI at Children's and they were just wonderful there ... plan on spending the whole day there though! It took us about 3 mths to get scheduled.
I'm not sure exactly where in Texas you are, but you need to check out sunshinecottage.org it's in San Antonio. It is an amazing school. They can do hearing tests, fit for hearing aids, etc. and you can get in immediately. We are in the parent infant program and it has been the biggest blessing for us.
They have people from all over, including other countries who have moved to bring their hearing imparied children there. It is such a support system. You can call them and they can answer any of your questions even if you don't attend and it doesn't cost anything!!!
Way to be proactive! My daughter has CIs (activated 8 months ago) and today she heard me WHISPER her name!!! It is a roller coaster of emotions, but an incredible journey. Good luck!
The hearing aides my not give him alot of sound but enough to keep his nerves stimulated. I really feel that whatever sound they can get till you can get him implanted (if that is how you decide to go)helps. I have two boys who are deaf if you have any questions feel free to ask. I wish that when my first was born there were sites and blogs..A connection I could have used...
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